Re: Treatment Centers/Physicians

My liver resection was performed at the Cleveland Clinic and my surgeon was and still is, Dr. John Fung. He is the Department Chair of General Surgery at the Cleveland Clinic and was the former Chief of the Division of Transplant Surgery at the University of Pittsburgh. For appointments the number to call is 216-444-3776. http://my.clevelandclinic.org/default.aspx

Dr. Fung is a remarkable surgeon. He took amazing care of me and got me through the darkest time in my life. Although he would be totally in his right to have a huge ego, he doesn't. Can't say enough positive things about him.

Just a note about the Cleveland Clinic....it is a HUGE teaching hospital so there are "teams" that take care of "pieces/parts" of a patient. During my 21 day stay at the Clinic after my resection, I was really frustrated at the lack of communication between the teams.

Re: Treatment Centers/Physicians

Mary's surgeon for her liver trisegmentectomy was Dr. Brendan Visser of Stanford. Mary's oncologist is George Fisher of Stanford. You can find them both by putting their names along with Stanford into your google search window. It is actually faster than using Stanford's own search engine.

Re: Treatment Centers/Physicians

Due to the volume of postings on this site some information may get lost. This one in particular is very important to those searching out a physician. Please, be so kind and continue to help us complete, in this thread, and add the names of your treating physicians. Someone else will benefit from your kindness.Thanks a bunch,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Treatment Centers/Physicians

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Treatment Centers/Physicians

My husband Tom has received his treatment at the James Cancer Hospital, part of OSU Medical Center in Columbus Ohio. His original surgeon and continuing care Dr. is Mark Bloomston. He is also seen on occasion by Dr. Tanio-Bekaii Saab. We have also gone to the UPMC Liver Cancer Center in Pittsburgh, Pa and seen Dr. Clarke Gamblin , basically for second opinions and possible liver transplant options. Based on a scale of 1-10 I would give all of them a 10. Mary

Re: Treatment Centers/Physicians

Hi Marion,Seeing these names and hospitals listed is helpful, especially for geographical guidance.However, should I assume that people are sending in names ONLY if they were happy/satisfied with their experience??

Also, maybe only I care about this since my mother is stage IV (considered non-resectable due ONLY to bone mets & NOwhere else), but I also would love to know what type of treatment these gave, and what stage the cancer was, and how it worked out. We are "beyond geography", hoping to find someone who is willing to take a chance with a very advanced but healthy patient by trying different things.

Diagnostic second opinions, pain management of bone mets, gall bladder surgeries, etc are all very different aspects that we could also be touching on, in addition to expertise in administering chemotherapy.

I am hesitant to even list my mother's physicians, as they have drawbacks in certain ways. But maybe I should, with a short description of our experience???

Re: Treatment Centers/Physicians

You are bringing up some interesting points. First and foremost, the Cholangiocarcinoma Foundation is adamant in acknowledging this board to be one of free expression of thoughts and opinions. Secondly, I attribute the uniqueness of this site to be a direct result of the input shared by each and everyone. The vast amount of knowledge gained by confronting this disease and the kindness shown from each and everyone touched by this cancer is remarkable. No one person leads the discussions nor, do we censor any comments. Collectively, the members (including you) have brought success to this site. I am proud to be part of this group. This, in a roundabout way may answer your question re: hospitals and physicians and whether one should post the good, the bad, and the ugly. Absolutely. If I remember it right, your Mom is troubled mostly by mets to her bones and she has received radiation. Is she still undergoing chemotherapy with Gem/Cis? How is your Mom doing? Most likely, you have read up on all previous postings re: bone mets. We have a few but; I don't think that we have truly explored to the fullest the unfortunate occurrence of bone metastases and possible treatment options. Collectively we may be able to do so. I am not able to add much to what has already been posted on this particular subject however; someone else may have knowledge to share with us. As a whole though, I think that this board is touching on all aspects of this disease. Your point is well taken regarding the attention given to chemotherapy treatments. Fortunately, people are able to make choices and I believe, that all of us aid each other in the decision making process, if so requested by the poster. We do also applaud and support those choosing a particular treatment (or none) if they feel it best suits their needs. The reason for establishing this particular thread is to provide a network of names of physicians and centers for patients to use as a resource including, the search for second, third, or more opinions. Please, do not hesitate to share with us your valuable experiences and continue to put out your questions and suggestions. It is always very much appreciated and welcome. Best wishes,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Treatment Centers/Physicians

My Husband Tom had his liver resection for CC at the Milwaukee VA Hosptial, Dr. Teresa Quinn was his surgeon. She is awesome and came to the VA from Froedert Memorial Hospital in Milwaukee. She has an extensive background in Liver Resections and Liver Transplants. Somewhere down the line, another Veteran may find this useful.

(The VA uses the team approach and many if not all his doctors were from Froedert Memorial Hospital and the Medical College of Wisconsin)

His current treatment is being done at BayCare Aurora Hospital, specifically at the Vince Lombardi Clinic. Dr. Nancy Davis is his oncologist. Dr. David Rhodes is his radiation Oncologist. Dr. Dempsey is his Interventional Radiologist and Dr. Ravi Kondivatti is his Gastrointestional Doctor. (All at BayCare Aurora hospital in Green Bay, Wisconsin)

I can't help but feeling that Tom is helping all these doctors learn about Cholangiocarcinoma and all of his experiences may be helping others that come down (in this area) with Cholangiocarcinoma.

Re: Treatment Centers/Physicians

Margaret,I do hope I did not come off as critical. I am just wondering how best to use these names. My mother's case does happen to be pretty "hopeless", so knowing more than just the name of the doc and the hospital would help. But I realize we are unique. We have not been offered much after quite a bit of searching. I really feel that having over 5 (my mother now has at least 40) bone mets is a death sentence, with chemo being the only option offered. But she is feeling quite healthy, doing 90 percent of what she wants. It is just so strange to think that she is going to die quite soon. That is why we have some cognitive dissonance- can't SOMETHING more effective still be done as all her functions are still very good???? Most of her body is successfully resisting this evil cancer.

Her first round of gemzar resulted in no side effects except for some fatigue, flat (still high) tumor markers, and a doubling of the mets in her spine from 20 to 40.Everything else is unchanged. So she is on gem one week then gem-cis the next for 3 months, one month now done. Thankfully no side-effects except fatigue (quite remarkable.) No idea what else is happening, ie with the cancer.Won't know for a while.Supposedly, the primary tumor is not any larger than when diagnosed in early Nov 2009, however.She has never had any symptoms of trouble with the bile duct or liver, etc.She has had her radiation on one painful tumor in the neck area. The window for radiation on her spinal mets is closed (not sure why). She has Zometa every month with her chemo. That is all she is eligible for.

The big question is: would a doctor anywhere be willing (or legally able) to try anything else on her? Cyberknife is a tumor by tumor thing- she has too many in her spine for that. Local surgery would be a great option, if only she did not have the mets in her spine. She apparently has NO OTHER tumors, not in the liver, no where.

Anyway, we are making sure she is enjoying her life, is comfortable. We just feel so strange "giving up" like this. Our understanding is that a successful result on average with the gemzar is only a few extra months, hopefully side-effect free.

God bless all of you for your inputs, your listening, your advice. And may each of you find some light in your troubles.

Margaret, if you prefer to put this post on another board, feel free.

We even wonder if she really has cholangio- bone mets seem pretty rare, esp if there are no other tumors beside the primary. Or if she has two cancers. Anyway, the biopsies at Sloan-Kettering resulted in "probably cholangio/all same cancer". MRI shows her primary tumor is sitting on the central bile duct. The local doc is "assuming" it is intrahepatic. The only way they got cancer cells was with a needle biopsy- the endoscopic brushing on the inside the central duct failed, and the local doc thought it looked smooth- again not usual way cholangio presents, if accurate. I am now understanding that there are really no absolutely 100% certain diagnoses with cancer. Cell differentiation is the other factor. So that is it.

Re: Treatment Centers/Physicians

In Nov 2009, at age 76, my mother, a generally healthy person, was found to have about 20 blastic tumors up and down her spine during an MRI to see why her neck was hurting her so badly.More imaging resulted in the finding of a mass on her central bile duct and gall bladder.Her local internist referred her locally to Dr Frederick M. Weeks of Vero Beach, FL.An endoscopic brushing inside the bile duct and a needle biopsy if a bone tumor failed in a local facility.My mother was able to get an appointment 4 weeks later to see Dr Manish Shah in the GI Dept of Sloan-Kettering in NYC, at the recommendation of Dr Weeks who knew that this was a cancer beyond his expertise, usually incurable and virtually untreatable. The questions were: is this gall bladder/ bile duct cancer, and is the cancer the same in the bones? Based on the answers, we would get a treatment plan from Dr Shah.My mother had two needle biopsies (one around the gall bladder and ducts and one in the spine) in two depts a week apart two weeks after her initial consultation- Sloan Kettering is a very busy place and it is very hard to get appointments. The conclusion was "probably" cholangiocarcinoma, and bone mets were "likely" from the same cancer.Dr Shah agreed with my mother's desire to be treated in Vero Beach while living at home. He came up with a treatment plan and forwarded it to Dr Weeks, who is now administering chemo. She started her chemo (finally!) on Dec 24, 2009.He refused to offer any direction with changes in her diet or additional supplements to enhance her chances of getting the tumors and supporting her immune system. "Don't make any big changes. Just be healthy." Hard for us all to hear as we were reading the Anti-Cancer Diet book, and take numerous supplements ourselves...

There is no continued conversation between the two doctors. Both are very pessimistic ("realistic", in their eyes). They just see it as a matter of time, and even questioned whether she should go on the second more toxic chemo (gem-cis). It now now four months since her diagnosis. She is feeling quite normal and has been on the more toxic regimen for about a month.We are grateful for the good quality of her life. But it is as if she really is not that sick and never has been. But no other treatments seem to be available due to the multiplying bone mets. All the doctors say is that there is nothing else they can do, and that we need to get a grip.

I and my father have TORN UP THE INTERNET to find more treatments. We even asked if Dr Shah if she should add something like an anti-angiogenetic or some other third chemical (directed to a specific pathway of cancer) to her chemo cocktail. I sent him a long list based on cc trials and pancreatic cancer treatments, which seem to be the basis for many cholangio therapies. He just wrote them off, saying that they cause too many side-effects. I did not understand that- I thought targeted therapies caused fewer side-effects than chemo.

My father is horrified at all this. But it is very hard to believe she is dying. We feel bad just "giving up".

Re: Treatment Centers/Physicians

I noticed it has been over 6 months since anyone has posted on this site but I think it has very worthwhile information. I would like to add UCSF Medical Center for those who are in California. I called for an appointment with Dr. Venook but since I could not get in to see him for two weeks, I made an appointment with his "understudy". She take all of his "overflow" patients.I had an appointment with Dr. Robin Kelley, oncologist. I went to her as a second opinion after my first round of chemo and radiation. But she will be my doctor when I have to start chemo, again.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.